Leaving a legacy of care for the love of Laila

When their baby was diagnosed with a rare genetic condition Steve and Maya McCormack decided they wanted to open a nursery for children with health problems. Catherine Scott reports
Steven and Maya McCormack, whose daughter Laila Milly who suffered from a rare brain disorderSteven and Maya McCormack, whose daughter Laila Milly who suffered from a rare brain disorder
Steven and Maya McCormack, whose daughter Laila Milly who suffered from a rare brain disorder

This weekend will be one of mixed emotions for Steve and Maya McCormack.

On Sunday their dream of opening a day nursery for children with severe disabilities and life-limiting conditions becomes a reality.

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It will be a proud moment and signifies more than three years of hard work and fund-raising by the couple, family, friends and the local community.

But it will also be a reminder of the little girl they lost and whose name is above the nursery door.

Laila Milly McCormack died the day before her first birthday.

She was born with Aicardi syndrome, a rare genetic condition meant that her brain had not developed fully and she had up to 30 seizures a day, with some lasting ten minutes.

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She also suffered an enlarged heart, cleft palate, lesions on her retina, cysts on her brain and repeated chest infections. There is no treatment, only management and care.

The prognosis for Laila was a very short life and although some people have been known to live until their 40s, just the day before her first birthday Laila died as a result of a chest-infection.

“Just getting out of the house with Laila was a military operation,” says 32-year-old Maya.

“We did have support from the Jigsaw community nursing teams and got respite care from Martin House Hospice, but their services are so in demand that it would have been such a help to have somewhere we could go for a few sessions a week, to be with people who understood Laila’s needs and to talk to other people who knew what you were going through. Having a child with complex needs can be very isolating.

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“It took us a long time to come to terms with Laila’s death, even though we knew she wasn’t going to have a long life.

“There is such a long waiting list to get any bereavement counselling and so we want the nursery to also offer some bereavement support for parents and siblings.”

The couple launched the Laila Milly Foundation before their little girl died, but pledged to continue after her death to ensure her memory lived on.

They set about fund-raising to make their idea into a reality and to make sure that their daughter’s legacy lives on.

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They have raised £165,000 to date with the support of local businesses including ASDA which runs funds for the state-of-the-art sensory room, the local Lions, Rotary and Inner Wheel clubs and Steve’s colleagues in the local fire service. They have also personally undertaken fund-raising challenges including climbing Kilimanjaro, sky dives, and organising balls.

They were lucky in the fact that Steve’s parents who own an opticians in Hemsworth had an empty building which they gave to the charity. They then set about renovating it, including the building of a new lift shaft to enable children to get to the first floor nursery easily.

The walls are decorated in bright colours and animal cartoons drawn by a friend of Maya’s. As well as the sensory room, there is a large play room, kitchen, bathroom and, upstairs,a quiet room for parents.

“We want people to be able to have a bit of time out knowing their children are in good hands, and to give them time to chat to other people who know what they are going through.

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“When you have a child with complex medical needs it can be difficult going to a play group or toddler group. People can stare even though they don’t mean too and they ask questions. We just wanted somewhere people could go and relax even if just for half an hour.”

Initially the nursery will be open twice a week for around four to five children and staffed by volunteers.

They even have a special vehicle which will enable them to pick up parents and children if necessary and take them to the nursery.

But the work doesn’t stop with the opening of the nursery which Maya and Steve want to be free.

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“We want to employ carers and eventually nursery nurses trained to look after children with multiple and complex physical needs,” says Maya. “Each nurse can cost around £35,000 a year.”

The next step is to recruit a fund-raiser for 21 hours a week to ensure that they can achieve their goal. “I plan to run the nursery but we need someone to co-ordinate the fund-raising and access things like lottery grants.”

Maya also wants to run sessions for siblings and also bereavement counselling.
“When we did lose Laila there was a long waiting list before we could get any sort of counselling. It is really important that people get support as quickly as possible once they have lost a child.”

Last year Maya gave birth to Reuben who will be one tomorrow. “I always wanted another child, but it was hard after Laila died,” admits Maya. “I was nervous, they say the condition is very rare but you always worry.”

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Aicardi syndrome only affects girls, so when they found out they were having a boy at their 20 week scan, they could relax a little.

As Reuben’s birthday drew close Maya knew she would have mixed emotions.

“We lost Laila the day before her first birthday so it is going to be an emotional time.” As will this weekend.

“We are very proud of what we have achieved and with such amazing support. Sometimes you do think it will never happen. But now we can’t wait for the doors to open. It is Laila’s legacy but it is also a reminder of what we have lost.”

www.lailamillyfoundation.org

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